Readers will be aware of the tragic consequences of Hurricane Mitch, particularly on people in Honduras. Despite the international aid effort, a letter from Olga Manuela Zelaya de Claros reminds us that disabled people are enduring particular hardship because of the hurricane:
'As you will know from the news, the situation in which we are living ... is critical and sadly the human loss has been great - we still cannot quantify the material loss.
Really it is like a film. We have not seen anything like it before. Unfortunately, we are a poor country and this leaves us in a worse state and now we are the worst country in Latin America...
I know that the situation of disabled people in any country is difficult but you cannot imagine how we are now living because there are priorities in the country and they cannot attend to our needs and this is why we ask for your generosity and that you organise something in your city to help us.'
'What we want is to provide these people with food to reconstruct their lives.'
Donations can be sent to: ACEDIF, No 12718-4 Banco de Occidente, Sucursal Comayague. Telephone 504 772 1503.
Somewhat unusually, the first Newsletter of 1999 starts with information about DAA itself. After editing the publication for a few months last year, I have returned to DAA, keen to assist the Director, Rachel Hurst, to prepare the organisation for the millennium!
After working as a disability researcher and trainer for the past six years, I am delighted to have been given the opportunity to contribute to DAA's essential enterprise again. As is so often the case with a new arrival, I have arrived with some new ideas, along with a healthy respect for what has already been achieved.
Although the past year has seen some dramatic staff changes at the DAA office, previous editors have ensured that the style and content of DAA Newsletters:
reflect the concerns of our readership, supports your action in furthering our human rights.
These are goals I do not intend to ignore, but I do think there are some new things that we could do.
Before, making any changes, I would like to describe what I believe is DAA's vital role.
The experience of disability is similar the world over, so much so that disabled people can justifiably claim to be a truly international community. As the Newsletter makes only too clear, the social and economic conditions in different regions ensure that there are substantial differences in the situation of disabled people, but one thing, above all others, joins us - our exclusion from mainstream society and the disadvantage that flows from it.
Our readers in Europe, in particular, will be well used to hearing the word 'exclusion', a phrase that seems to be particularly fashionable at the moment, but whilst it might describe the situation of disabled people, in general, it tends to hide the personal cost of exclusion - isolation.
Information that serves to bring disabled people together, to encourage a feeling that despite our personal isolation we are part of a global community, must benefit us all. In the wider context, I also believe that the exchange of relevant information is vital to our representative organisations, again justifying the claim that information is power.
In view of the comments above, you will not be surprised to hear that DAA warmly encourages you to copy and circulate the Newsletter. If you are copying the Newsletter for the same people regularly, please suggest they they contact us, so that we can add their details to our mailing list.
Above all else, the DAA Newsletter is YOUR newsletter - please keep writing to us.
Richard Light
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In November 1996, Action on Disability and Development [ADD] published a report on the situation of disabled children in Ghana, that painted a picture of neglect and disadvantage, with many children reportedly facing a future without any meaningful activity.
The scope of the 1996 Report was limited and one of the author's recommendations was that a broader follow-up study should be done. Research into disabled children undertaken by CEDEP [Centre for Development of People] in 42 communities in the Tamale and Savelugu/Nanton Districts in the Northern Region for ADD in Ghana reports the results of that more extensive study.
Significant numbers of disabled children are not receiving an education, often because parents say they cannot afford to send them. However, as education for disabled children in Ghana is free, there is an obvious need for parents to be better informed of this facility.
There are two schools for visually-impaired children in Ghana, both located a considerable distance from the Districts being surveyed.
Almost 69% of children with learning disabilities were not receiving formal education, with local schools reportedly refusing to allow their attendance.
Children with epilepsy, about 20% of the children surveyed, endure particular hardship as local tradition holds that touching the toe, exposure to saliva during an attack or passing over the urine of someone with epilepsy causes others to acquire it. Such beliefs were also common amongst teachers, who then seek to dissuade the child from continuing with their education, indeed, 80% of the children in the survey were not attending school.
'Disabled children are commonly regarded as liabilities and a burden to their families.' A common view amongst those outside the family seems to be that the disabled child is God's 'punishment' on the parent, with the result that many families try to restrict the movement of their disabled children, so as to reduce the stigma attached to the whole family by their neighbours. Researchers found that children disabled at birth were still routinely killed.
Particularly negative attitudes were reported toward children with a learning disability or epilepsy, although those with visual impairments and physical disability are viewed more positively.
As the report makes clear, many of the impairments affecting children in the study were preventable. Despite the high incidence of disability in these communities, disabled children are still subjected to discrimination and excluded from school.
This ADD Report is available from: Action on Disability and Development, 23 Lower Keyford, Frome, Somerset BA11 4AP, United Kingdom. Telephone: + 44 1373 473064, Fax: + 44 1373 452075, Minicom: + 44 1373 463932, e-mail: add@gn.apc.org.
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Or so says Minette Marrin, in a Sunday Telegraph article, published on 29th November 1998, under the title: 'My battle with Mencap'. Dripping with fervour, Ms Marrin tells her readers that, despite the negative reactions that her views have already attracted, she feels compelled to highlight the nonsense that is going on in the name of the 'mentally handicapped' [her words, not ours, Ed.].
It has been difficult to provide a balanced description of Marrin's article. Here are some edited highlights for your enlightenment.
'I think we are seeing a strange shifting of the goal posts here, in the name of equal rights, and while it may be well intentioned I think it's extremely misguided... [Mencap's] chief executive ... said in a letter to me that Mencap's aim has always been to create the opportunity for people with a learning disability to be equal citizens in all respects. That includes the right to marry and to have children, the right to vote and now the right to be a trustee.'
'Mencap is not alone; its approach is the new orthodoxy, and not only here but in other parts of Europe and the United States. I have spent the past week in Holland discussing this with others who campaign for full equal rights and even claim that the mentally handicapped contribute equally to society. This dishonest thinking fills me with grief; it's a simple case of psychological denial.'
'People whose brains are damaged, whose intelligence is seriously impaired, do not and cannot have equal rights. They cannot undertake the responsibilities that go with rights, and for many of them there is little they can do at all without a great deal of support and encouragement. Most of them need round-the-clock support, even when living fairly independently, and those few that don't still need a great deal of expensive help and monitoring.'
Marrin concludes her attack with the bold claim that: 'In justice to everybody, we should be campaigning not for their equal rights but for their greater needs. If that is wildly controversial, then I am Alice in Wonderland.'
Although it appears that Mencap have put considerable time and effort into responding to Marrin's crusade, some of our readers may feel the need to write themselves. We would advise against addressing your response to 'Alice in Wonderland', despite the invitation to do so.
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Thomas Schweiger, of the European Campaign on Biotechnology Patents, has provided us with important background information about the Dutch government's challenge to the Life Patents Directive (EV 22-28 October). There are a number of vital lessons for all disabled people in the information supplied, not least the apparent power of the biotechnology lobby. We understand that the issues covered by the Directive were rejected by Members of the European Parliament (MEP's) as 'unethical' just a few years ago but, after a campaign by the biotechnology industry, have since become more ethical.
At the heart of the Directive is the industry's claim that without it, they are unable to patent biotechnological inventions. However, Thomas assures us that there is no such difficulty, with the industry already holding a 'huge number' of European patents for biotechnology inventions. However, in pushing for increased access to the commercial protection provided by patents, it seems that the biotechnology industry has managed to include discoveries, rather than merely inventions within the scope of the new Directive, bringing it into direct conflict with the existing European Patent Convention.
The fear is that by extending patent rights to 'discoveries', companies would effectively be able to patent plants, animals, genes and even parts of the human body. 'This would make the treasure of biodiversity directly accessible for the industry without any benefits for local communities and countries - a strategy termed ''Biopiracy''.'
The Dutch challenge allows independent legal evaluation of the Directive, free from the political lobbying that has apparently marked its issue. Clearly, the power to 'own' part of nature for commercial gain is something that many people would be very worried about and we will keep you informed of developments. However, readers should be aware that there are no time limits for the process of challenging the Directive and it is thought that it may take two years or more to resolve the issue!
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''I think this initiative is of such great importance it should be known outside Bulgaria.''
Bengt Lindqvist
In 1997, the Bulgarian Council of Ministers set up a Rehabilitation and Social Integration Fund, with responsibility to implement national policy regarding the social integration of disabled people.
Dr Andreas König was appointed as an External Expert to assist the Bulgarian government's elaboration of this new national strategy. Dr Konig's report to the government makes clear that the UN Standard Rules, together with policy papers produced by the European Union and Council of Europe, provided the point of reference against which the new strategy was developed.
Describing existing conditions, Dr Konig states:
'At present, disabled people in Bulgaria suffer particularly from the remnants of the past, where most of them were isolated, protected and cared for by the State under basic provision. Today, the majority of disabled people are isolated and unable to leave their homes due to accessibility and mobility problems and lack of appropriate support services. This lack of access also leads to reduced achievement in education which worsens their opportunities in the labour market as well as participation in social and cultural life.
Public disability policy is based on a medical model of disability where the focus is on lost capacities and limitations rather than on equalising opportunities through increased participation and affirmative action. This assessment is also true for large parts of the current key legislation... which does not focus on enhancing social participation but continues to discriminate through ''protection'' '
In stark contrast to existing policy, the draft national strategy builds on four fundamental, human-rights, principles:
The principle that the various systems of society and the environment, such as services, activities, information and documentation, are made available to all, particularly to disabled people,
the principle of equal rights which implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies and that all resources must be employed in such a way as to ensure that every individual has equal opportunity for participation,
the principle that disabled people are members of society and have the right to remain within their local communities. They should receive the support they need within the ordinary structures of education, health employment and social services,
the principle that as disabled people achieve equal rights, they should also have equal obligations. As those rights are being achieved, societies should raise their expectation of disabled people. As part of the process of equal opportunities, provision should be made to assist disabled people to assume their full responsibility as members of society.
Having established these four guiding principles, the strategy goes on to identify eight broad areas that the national strategy should address:
1. ''Legislation''
2. ''Accessibility''
3. ''Education''
4. ''Vocational training and employment''
5. ''Information and awareness-raising''
6. ''Participation and decision-making''
7. ''Prevention and early intervention''
8. ''State institutions for People with Intellectual Handicaps and Psychiatric Problems''
Dr Konig's report will, we understand, form part of the submission to be made to the Bulgarian government this month and, if accepted and implemented, will undoubtedly ensure that Bulgarian national policy will offer an example against which others will be judged.
Dr Konig's work joins a growing body of literature that illustrates just how important the UN Standard Rules remain in the development of coherent disability policy.
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The fifth World Assembly of Disabled Peoples' International [DPI] took place in Mexico City between the 2nd and 5th of December, 1998.
Almost 2,000 delegates, representing 76 countries, took part in the Assembly. There were wide-ranging debates, on many issues of concern to disabled people world-wide, which will be described in the Assembly Report, due for publication later this year. There were recurring themes in all debates:
1. the poverty endured by the vast majority of disabled people
2.
the exclusion of disabled people from almost all aspects of society, and
3.
the lack of control that disabled people have over their own lives.
The following officers were elected by the General Assembly, for the period 1998 to 2002:
Chairperson: Joshua Malinga, (Zimbabwe)
Deputy Chairperson,
Development: Enrique Sarfati Cohen (Argentina)
Deputy Chairperson,
Under-represented Groups: Irene Feika (Canada)
Hon. Secretary: Frank
Mulcahy (Ireland)
Hon. Treasurer: Matthew St. Paul (Caribbean)
Information and Communication: Venus Ilagan (Philippines).
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A copy of a report presented to the World Bank, by Robert L. Metts, has been sent to us. The Report, entitled: Suggested World Bank Approach to Disability; Discussion Points for Meeting of the International Working Group on Disability and Development, September 24-25, 1998, offers a brief but impressive summary of issues and suggestions for World Bank activity. Section 1 describes the authors concern for developing 'fundamental principles of inclusionary and empowering disability policy' by proposing that cost-effective strategies, to increase the economic and social contributions of people with disabilities must address an integrated programme of:
Rehabilitation strategies, and
Inclusion and empowerment strategies.
For Metts, such a programme must ensure that disabled people pass through three different stages 'of physical and social integration', described as:
1. 'surviving the disability and beginning to recover'
2. 'address[ing] the needs associated with becoming as self-reliant as possible, and with gaining social access', and
3. gaining access to activities that give life meaning and purpose.'
Some of us may have difficulty in completely accepting the use of these three stages, not least because it seems to emphasise the needs of people who become disabled later in life. Despite this, we believe that the remainder of Metts' Report shows an important awareness of disability.
''Nations and international organizations wishing to facilitate the passage of disabled people through all three of the above stages are best served by an integrated combination of:
''policy commitments and institutional mandates to include disabled people and a concern for their rights and needs in all of their own activities, and
comprehensive social and environmental strategies designed to remove and prevent social and architectural barriers.''
Importantly, Metts states these commitments and strategies need a commitment to:
Inclusionary policies and practices.
Removal and prevention of architectural and design barriers.
Affirmative strategies to include disabled people in mainstream political, vocational, educational and recreational activities.
Support for, and constructive engagement with, organizations of disabled people.
Provision of cost-effective assistive technology.
An example of the emphasis that Metts continues throughout the Report is provided by the following example:
''Disabled people and their families are the most qualified and the best equipped to support, inform and advocate for disabled people. They are also the most qualified, best informed and most motivated to speak on their own behalf concerning the proper design and implementation of strategies to allow them the social and economic access they need to increase their contributions to their societies and economies. Therefore, support for, and constructive engagement with, organizations of disabled people are among the most cost-effective investments available to nations and international organizations wishing to increase the social and economic contributions of disabled people.''
Unlike many discussion papers that we have seen, Metts goes on to list practical ways in which the World Bank might achieve the aim of promoting the inclusion of disabled people and, before doing so, advises that:
''The World Bank has the opportunity to significantly and cost-effectively contribute to the global rehabilitation, inclusion and empowerment of disabled people...''
We warmly welcome the imaginative and thorough contribution that Metts has made to the World Bank's understanding of disability and can only hope that so useful a contribution is given the respect that it deserves as future policies are developed and implemented by the Bank.
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Over 70 representatives of disability organisations throughout Southern Africa met in July this year to declare their human rights. A four-day workshop, in Tlokweng, Gaborone, concluded with a series of resolutions that have been called the Tlokweng Declaration.
As will have been clear from DAA's coverage of the UN Standard Rules, we continue to use the Rules as the most effective model for pursuing disability rights and we were delighted to find that our colleagues in Southern Africa appear to share our concern for them. Amongst the Resolutions forming the Tlokweng Declaration were as follows:
''That the principles of the United Nations Standard Rules should be incorporated into national legislation of our countries and disability issues must permeate the agenda of regional institutions, especially SADC [Southern Africa Development Community].''
''Disability issues should be prioritised and allocated specific funding in the government budget.''
''Enforceable and implementable disability legislation and policy should be established in countries where it does not exist. The disability legislation and policies should be evaluated and monitored.''
''Self-representation of people with disabilities should be promoted in all structures of governments.''
Finally, the workshop adopted a strategy aimed at raising awareness of the UN Standard Rules amongst disability organisations, NGO's, governments and the media [Information taken from an article by Frans Pale, Insight - The Newsletter of the Botswana Council for the Disabled, September 1998].
The UK's Observer newspaper recently highlighted a health risk, conservatively estimated to affect 30,000 people each year in Britain alone. In an article published on 22 November 1998, John Sweeney warned of the risk of serious injury or death as a result of deep-vein thrombosis, caused by long periods of inactivity when in cramped seats. Reduced air supplies to the cabin and free alcohol are also cited as contributory factors.
The particular role of cramped seating in causing the problem is emphasised by the name applied to the condition - Economy Class Syndrome. Both airlines and the UK's Civil Aviation Authority are dismissive of the claims made in the article, suggesting that there is no medical evidence of increased risk of deep-vein thrombosis in airline passengers.
It would seem that reducing alcohol consumption, increasing exercise, avoiding cramped seating conditions and taking prophylatic's - like Aspirin - all help to reduce the risk.
Motse Wa Badiri Camphill is a community offering disabled people vocational training, employment and accommodation in Otse, Botswana. A Hearing Aid Workshop is one of four workshops at the Community, where disabled and non-disabled people work
side-by-side, and it has recently been a joint winner of the South African Design for Development Awards. HearSAY, the annual bulletin of the Motse Wa Badiri Hearing Aid Workshop, states that: 'The awards give recognition to products that exemplify the concept that good design is a major contributing factor in offering solutions to various problems facing developing countries...'
Warm congratulations go to all the workers at the Workshop for achieving this recognition for their work.
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DAA have received a letter from Elizabeth Bluhm, a member of the American Medical Students' Association's Committee on Disabilities. The Committee is described as a group of students who are disabled, have chronic illnesses and/or hope to practice medicine for disabled people.
In Elizabeth's words:
'It would be useful for some students to experience health care issues of disabled people outside of the U.S. Are there any readers ... who are involved with health care clinics for disabled people? Are there any physicians willing to mentor students who are in their clinical years of training, for a period of two to six weeks?'
If you are able to offer any assistance or advice to Elizabeth, please write to: Elizabeth Bluhm, 50 East 98th Street #14B, New York, NY 10029, USA.
Chatterley Jere from Malawi has been a welcome and regular correspondent with DAA and he has asked us to publish his request for penpals. We are pleased to invite readers to write to Chatterley at KVRTC, Post Bag 1, Namadzi, Malawi.
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It is with deep regret that we must report the death of Ian Stanton, at the age of 48, one of Britain's best known disabled singer-songwriters and a dedicated disability activist.
Born in Oldham, Lancashire, on 28 October 1950, Ian's entry into disability politics began when he wrote a very critical newsletter, about the Queen Elizabeth Rehabilitation College, where he was sent after developing Berger's Disease in the 1970's. The College management were so impressed (?) with Ian's efforts, they expelled him, ensuring that he had the distinction of being the first disabled person to leave the College in such circumstances.
During Ian's musical career he appeared at numerous disability arts cabarets and rallies, as well as mainstream events. He also appeared at the Glastonbury Festival, the 1992 Vancouver Folk Festival and the 1996 Cambridge Folk Festival.
Ian died on November 26 and is survived by his wife Audrey and stepson Brett, to whom we extend our deepest sympathy and love.
Some people call me a rebel
Some people call me a red
One time
I'd lie awake and worry
Just exactly what it was I'd said
Maybe older
maybe wiser
These days I sleep peaceful in my bed
Chorus
Because I'm taking liberties, taking liberties
Taking liberties with
me
Yes I'm takin liberties, bein' just who I wanna be
I'm takin
liberties with me
I never climbed any mountains
I never wanted much to
try
Don't need to live in a prison
To wonder what it feels like to fly
Now I'm soaring like a seagull
Dropping little presents from the
sky
Chorus
Don't need no misunderstandings
I got no ransom notes to pay
Got
no knees I got no standing
But what's the big attraction anyway
As I
roll into the sunset
There's just one more thing I gotta say
Chorus
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